[tri-med] Re: Possible seizure activity...?

Weird, Elanor had the same thing happen at her sleep study.  She has always 
rubbed the back of her head on her pillow/whatever she is laying on.  She 
used to do is so much she had a big bald spot on the back of her head, and 
sometimes got a sore.  When she was really tiny she would put herself to 
sleep by doing that.  I think it was self-stim, like you were saying, or 
comforting to her, like how some kids stroke their teddy or favorite 
blankie.  After talking to me, the tech and the sleep specialist didn't 
think there was anything to worry about since we haven't had any other 
indication of seizures.  She doesn't do it much anymore.  Now Elanor 
scratches whatever she is laying/sitting on, but backwards.  She puts her 
hand palm up beside her head and scratches up.  She really digs on coarse, 
noisy material, and loves to scratch our new microfiber couch.  She loves to 
listen to the noise it make too.  She's pretty funny about it.
I hope things go well at the neurologist.  Let us know!

Jennifer, mom to Arwen, 7; Elanor (t18), 5; caregiver to Joe (cerebral palsy 
& spastic displaysia), 26 & Eric (cerebral palsy & seizure disorder), 19; 
and wife to Andrew

----- Original Message ----- 
From: "Loren Warnemuende" <lorenwarn@xxxxxxxxx>
To: <tri-med@xxxxxxxxxxxxx>
Sent: Monday, March 28, 2005 11:34 AM
Subject: [tri-med] Possible seizure activity...?


> Here's hoping you've all finished celebrating your Easter weekend and
> are ready to jump back on the list! :)  I'm in need of advice, etc.,
> from the vast wealth that I know is here.
>
> Last Wednesday night we had Keren's annual sleep study (regular cpap
> checkup and all).  In the course of the night, the tech observed a
> couple incidents that concerned her.  She (the tech) has experience
> with doing EEGs and so is familiar with seizure activity, and she saw
> Keren doing some things that she though might be nocturnal seizures.
> As a result, the sleep clinic docs are sending us to a pediatric
> neurologist for our first time (our appt. is next Monday).
>
> Here's what Keren was doing:  While sound asleep, she would shake her
> head or her knees from side to side.  The sleep study monitors a few
> parts of the brain, and the tech was trying to see if the action
> occurred before Keren's brain patterns changed or after; it wasn't
> totally clear.  It didn't happen continually through the night, just a
> couple times for maybe a minute or so at a time.
>
> This is something we've seen Keren do before, but rarely, and usually
> it's when she's falling asleep, not sound asleep.  Also, it's very
> similar to the self-stim stuff she does at times when awake (and we can
> tell that that's NOT a seizure).  As far as we know we've never
> observed seizure activity in Keren before.
>
> The tech said the other thing that alerted her was that when she tried
> to stimulate Keren while this was happening, she didn't get a response.
>  I'm not quite as sure on this because when I took Keren's hand, or put
> my hand to her head she settled.
>
> Whatever the case, it's definitely something we want to investigate.
> Can any of you give me some heads-up as to similar experiences with
> your triers? Also, what kind of questions should I be prepared to ask
> the neurologist?
>
> Thanks ahead of time!!!  I'll tell you, I was so thankful for my
> experience with this list when the tech came in and asked, "Does Keren
> have seizures?"  As alarming a question as it was, I wasn't in major
> shock because I know that this IS something common with our kids, and I
> knew what she was talking about.
>
> Loren (wife to Kraig, mom to Keren, T18, two years old (9/27/02), and
> new little one due 7/13/05)
> Southeast Michigan
> http://webpages.eng.wayne.edu/~ad6075
>
>                  Building ___ooOOoo__ Rainbows
>                       www.trisomyonline.org
>                  Families Helping Families On-line
>
> 


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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